Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
No denialism or minimisation This applies challenges faced by chronically ill people.
No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

founded 4 months ago

MODERATORS

[email protected]

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Let's put her on saline & discharge right away (files.mastodon.social)

submitted 3 months ago* (last edited 3 months ago) by [email protected] to c/[email protected]

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discharge = discharge from hospital

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[–] [email protected] 76 points 3 months ago (2 children)

Happens to men too unfortunately.

Went into the hospital last year in extreme pain between my chest and abdomen. This is the exact pain both my mother and father felt before their gallbladders had to be rapidly extracted.

Now, when I say pain, I fucking mean pain. They were giving me crazy amounts of high strength pain killers and they were lasting for more minutes. Then they prescribed me something and discharged me. Next day I'm back and worse than ever, so they finally admit me and assign me to the surgeon.

Man comes in immediately acting like I'm just here seeking drugs. I'm reeling in pain and we're all explaining what's happening. Dick head refused to do any tests, he just wanted to wait me out, so the bastard puts me on a no food, no liquids diet, so now I get to sit there and suffer in pain while also being incredibly thirsty and hungry.

Next day's Saturday. I'm still in pain and I've heard nothing from the surgeon. I'm doing everything short of getting on my knees and begging for water. Still no tests. Still won't take me off the diet.

Next, we threaten to leave and seek care elsewhere. The patient advocate comes in and we explain what's been happening. They're clearly shocked by his behavior, but can't say much. So, without warning, she calls the surgeons personal number and puts him on speaker. We can all hear him out on a boat doing God knows what instead of testing me. So I go nuclear and loudly proclaim that he had better get his ass off that boat or the next phone call will be from my lawyer.

Within the hour I'm finally getting my blood drawn and tested.

The next morning, I still haven't seen the surgeon. I'm woken up at 6am by a nurse telling me I have surgery in an hour. Turns out some levels were so high that they had to call in an emergency surgery team to do exactly what I had told this Dr. Cox wannabe dick head two days earlier.

Basically, the surgeon was content to let me lay there and die to prove I was drug seeking.

I honestly should've looked into malpractice suits, cause I'm still experiencing tons of issues a year later

[–] [email protected] 19 points 3 months ago

You should seriously look into that, that guy could have killed you and might kill someone else.

[+] Xanjis -6 points 3 months ago (1 children)

This is why automation is good. Humans can't be trusted to do critical jobs such as doctor, lawyer, cop, teacher, or judge without being influenced by a bad experience they had a decade ago, what they ate last, their pending divorce or how much sleep they got last night.

[–] [email protected] 3 points 3 months ago* (last edited 3 months ago) (1 children)

Honestly that just leads to automation with built-in bias, and now you can't even threaten a doctor with a malpractice suit because you can't talk to a person, or the only person you can talk to says "sorry, the computer won't let me".

You can't use technology to fix social issues. People keep trying, and every time it just hurts chronically ill and disabled people even more. Have you ever heard of NarxCare?

NarxCare is a prescription drug monitoring program (PDMP) run by Bamboo Health. Bamboo Health was formerly known as Appriss. It is widely used across the United States by pharmacies including Rite Aid as well as those at Walmart and Sam’s Club. The NarxCare software allows doctors to view data about a patient, combining data from the prescription registries of various U.S. states to make the registries interoperable nationally. It also uses machine learning to generate an "Overdose Risk Score" that potentially includes EMS and criminal justice data; these scores have been criticized by researchers and patient advocates for the lack of transparency in the process as well as the potential for disparate treatment of women and minority groups.

[–] Xanjis 1 points 3 months ago (1 children)

Sure you still have innate/learned biases but eliminating situational (recent divorce) and bodily (hunger/sleepy/horny/sick) bias entirely is still a massive reduction in the total amount of bias you face day to day. If anything being able to see the biases of the data going into something like NarxCare is a good thing because now you have a paper trail for improvements. You can't just grab a hundred doctors and ask them "have you ever denied care due to your biases against women?" because the bad ones will either lie or not realize what they have done.

[–] [email protected] 2 points 3 months ago

I would genuinely rather work with a doctor who just got divorced than have to fight the invisiable AI blackbox that calls me a drug addict for being chronically ill.

You can’t just grab a hundred doctors and ask them “have you ever denied care due to your biases against women?” because the bad ones will either lie or not realize what they have done.

Unlike Narxcare, which just denies care due to biases and won't tell you why because it's a machine learning blackbox. There is no "paper trail" for NarxCare, because denying care to patients is the point. I can at least argue with doctors, or request a new one.

You can't fix social issues with technology, and every attempt will just make things worse for the affected people.